Meet Louise and Merik, mother and son whose loving time spent together has empowered Merik to overcome his condition of epilepsy as he grows.
Louise (Merik's mother), what’s a day in your life as a carer?
Louise: "As far as epilepsy goes, there’s not much really, because he has not really had that many seizures. The only thing I have to watch out for is the summer heat. Heat is a trigger - and also if they get tired. That’s the only real adjustment to my life."
What type of epilepsy does Merik have?
Louise: I have a baby monitor in Merik's room because he has Rolandic Benign Focal Childhood Epilepsy; that means it’s childhood epilepsy, but he only has seizures at night time.
And Merik, how would you describe a day in your life?
Merik: "At first, it was not very nice because I could not do as much. And with sleeping, you don't feel as safe because there's a chance to have a seizure - which isn’t the best thing to think about."
Louise: "When you first had it, it was quite scary wasn’t it? The first few weeks after…"
Merik: "I didn’t wanna go to bed.
But it’s not as bad as it used to be. When I first discovered I had epilepsy, I couldn’t do as much. I couldn’t see 3-D movies, and I couldn’t go in the heat as much.
Now, since I’ve lost [the seizures] a little bit more, I think it hasn’t affected much of my life - maybe a little bit."
Louise: "In the summer…"
Merik: "Yeah, [the heat's] the only thing that affects me now."
Louise, what’s the most fulfilling aspect of your role?
Louise: "Learning about the condition and being a bit more informed. Also, obviously being more vigilant and observant with your child than how you’d usually be.
Having a lot of hospital appointments meant spending a lot of one on one time with Merik. Maybe not in the most positive environment, but it was time we spent together."
What are some common misconceptions about epilepsy?
Louise: "That’s it’s a disability. It’s not.
With Merik’s epilepsy, it’s one that he’ll grow out of. In many cases, children grow out of it. But he’s coming up to puberty. He’s 11, so sometimes it can kick back up again: hormones can be a bit of a trigger for us."
Merik: "People generally think it’s serious at day. At my old school, they always thought I’d have one in the day so they were always a bit more wary… so yeah, they thought the seizures could happen all the time."
From your understanding, what would a greater community understanding about epilepsy achieve?
Louise: "It will get rid of some of the stigma attached to epilepsy. I remember as a child having a friend [living with epilepsy], and people treated her as if it was contagious. In those days, not many people were educated about it. I think these days people are a bit more educated."
How important do you feel Epilepsy WA is in helping people living with epilepsy?
Louise: "Spreading knowledge. Getting the education out there. These days, there’s a lot more awareness about it because of organisations like [Epilepsy WA]."
What has your experience of an Epilepsy WA support group been like?
Louise: "We have [attended one] via email. The support group has been helpful because when Merik first got diagnosed, Epilepsy WA gave us some help. I was considering getting a movement sensor for Merik: a pad that we would put on the bed to let us know if Merik was having a seizure. They were very helpful with that.
I think we were also going to go to a camp, but we ended up not going…There’s a lot of activities if you want to participate."
Finally, how would Purple Laces Month benefit you?
Merik: "It’d make me feel better!"
Louise: "Yeah, it makes you feel better that there’s something there to support us."